Hey all, new member here

[Doug]

Phil ~ I couldn't bring myself to look, though gross things generally are attractive to me....

[Jack]

That would be your maxillary sinuses. Did you have a CT scan of the sinuses?

Scans, cameras, operations, you name it. And the stupid ENT still got the diagnosis wrong!

[DEE]

The biopsy taken from my nose was were they got my postive wg result from twice plus a might be biopsy from my leg after the thought it was just cellulitus DEEx

[Psyborg]

I had a follow up today. I'm actually responding to CTX as optimally as possible. Turns out that some of my issues I am having are probably related to being on pred so long, and we are speculating the fatigue is related to the CTX because it hadn't occurred to me until today that it was happening roughly the same time each day after I took the CTX dose in the morning. I get to start finally tapering down from 40mg pred starting tomorrow, going down a bit weekly until I get to 20 when we are going to slow the taper more. Will roughly be about the same time as my next appointment I believe. All in all I'm pretty happy with the news considering I was afraid things weren't going well, turns out I'm paranoid

[elephant]

Oh, your not paranoid..your just on top of your health care! So glad you are heading in the right direction. You will feeling better soon.

[Sangye]

Psyborg, that's great to hear. Ctx is chemo, after all. Take a huge toll on the body. And pred depletes the adrenal glands, which are your body's battery pack. Even if the Wegs is under control, ctx and pred will create a lot of fatigue.

[DEE]

Good news Psyborg keep up the good work DEEx

[marta]

Oh, your not paranoid..your just on top of your health care! So glad you are heading in the right direction. You will feeling better soon.

Since I got on the WG boat, I've been totally paranoid - what's this, what's that, why am I feeling this way, is it the drugs, am I flaring, do I have a cold?.
It's been all you wonderful people talking me off the ledge of paranoia and into reality and I'm ever so grateful.

[jola57]

You are welcome Marta. Ha we all are in it together.
Talking about CT scans, I got my bone scan back and well it is interesting. Got me some hot spots in the elbow, knees, hips, and of course in the left foot. But, surprisingly my whole skull is one bit hot spot, the only white area are my two eye orbits and my teeth. I made an appointment with my GP fot tomorrow as to what that may be - sinuses? but i dont feel anything there, and what next for my left foot. Probably a CT scan. There could be a stress fracture there.

[elephant]

Jolanta that is what my left side of my head lookedl like on a ct scan. It sounds like your sinuses are involved.